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Re: To all who have joined this forum recently

Posted: Thu 25 Jul 2013 7:12 pm
by Lia Williams
Hello Daniel,

Welcome to the forum. We have a list of KC friendly opticians on the website, hopefully one will be near you.

http://www.keratoconus-group.org.uk/optoms/index.php


Lia

Re: To all who have joined this forum recently

Posted: Tue 22 Apr 2014 5:24 pm
by Clare
I've just joined the forum and wanted to say 'hello'.

I was diagnosed with kerotoconus in my early teens and have never met a fellow sufferer. Its kind of exciting to find a community of people who will (probably?!) understand the frustration of fitting contact lenses, the perils of driving at night and the difficulties in explaining the latter to 20/20 sighted friends!

Re: To all who have joined this forum recently

Posted: Fri 25 Apr 2014 11:51 am
by Anne Klepacz
Hello Clare and welcome!
Yes, you'll find lots of people who understand what you're talking about here! And thank you for sharing your experiences on other threads. As it says back at the beginning of this thread, if you'd also like to be on our mailing list for newsletters and other info, just PM or e-mail me your postal address.
All the best
Anne

Re: To all who have joined this forum recently

Posted: Thu 11 Sep 2014 10:43 pm
by Gaz2k21
Hey All,

i'm new to the forum and thought I'd say Hey.... I recently got diagnosed with Keratoconus in both eyes and am currently in the throws of dealing with that (I've explained this in another post so wont bore you guys with the details).
Just would like to say this is a great site and that I would be very interested in some newsletters etc (Anne I've dropped you an e-mail)

Regards

Gareth

Re: To all who have joined this forum recently

Posted: Fri 24 Jun 2016 8:34 pm
by Jetbtbelanc
Hello evryone?my name is Alex I from Russia.I am 24 years old.I want to tell about my history.I learned about my diagnoses 6 months ago .I was upset.
I had a very big depression I lost my job.I decid leave Moscow and come back in my hometown.My life is chenged.There is a lot of thoughts.I am thinking about my KC everyday.I don"t use any contact leanses(it is very Expansive for me).My left eye is not good(I mean the doubling).My right eye is gone?but it sees worse then that one).Im the past Ihad a beautifull job.Currently I have nothing,Everyday I am thinking about a suicide .I have apathy .I don"t know how to live.

P.S I apologize for mystakes I have been learnig English for 3 months.

Re: To all who have joined this forum recently

Posted: Mon 27 Jun 2016 5:40 pm
by Lia Williams
Hello Alex,

Welcome to the forum.

I'm sorry to read that keratoconus has caused you to lose your job and your life has had to change. I hope that by returning to your home town that you have the support of your family.

Most people with keratoconus do get better sight with contact lenses than they do with glasses however glasses can help. But a glasses prescription for keratoconus is not straightforward as we often give inconsistent replies to the "better or worse?" questions. If you can try to find an optician who is prepared to spend time with you to optimise your glasses prescription this could help you.

Lia

PS Your English is very good, especially if you've only been learning it for three months

Re: To all who have joined this forum recently

Posted: Wed 29 Jun 2016 7:52 am
by CrippsCorner
Hi Alex.

I'm sorry you're finding the diagnosis so hard to cope with, and sure, it can be life changing, but there's no reason you can't live a full and happy life with keratoconus. Have you had any appointments with experts to discuss needs? As you say, things can be expensive... but for instance maybe RGP (hard) lenses could be an option as they can last years!

There is also something called cross-linking which can stop your vision from getting any worse, but again it'll probably come at a price.

Olly

Re: To all who have joined this forum recently

Posted: Wed 17 Aug 2016 8:17 pm
by Stealth_Za
Hi,

I'm new to the forum. I've been a KC sufferer since around '08 (I'm now 23). I've tried every lens (RGP too painful, piggyback too laborious, soft ones did nothing and hybrids kept clouding after an hour). So safe to say I never used any lens for more than a week after getting them and I've gotten through high school and the first 4 years of medical school (currently in 4th) with nothing but the CXL procedure (done in 08) at my back. I also do a 300km roundtrip every weekend to visit home. So to anyone that's struggling with the diagnosis, push on and try your best to live with the challenge. Coping mechanisms include lots of pc usage with tonnes of zoom (that's basically how I study and get my work done). Complications of this thing though include a now straight cervical spine with radiculopathy and a lot of back pain because of my bad posture associated with reading too close to books and sitting funny to get my face close to the pc screen. So I'm at the physio for that (and the best gf ever who has really helped me with this condition and all it's challenges).

I have however set myself up for scleral lenses which should be arriving next week with final adjustments made. Tried the trials today and it looked/felt gorgeous. None of the nonsense that the other lenses had. Just my 2 cents.

Oh and, hello everyone :)

Re: To all who have joined this forum recently

Posted: Sun 21 Aug 2016 2:18 pm
by Anne Klepacz
Hello and welcome! All the very best with your new sclerals (and with the remaining years of your medical training)!

Re: To all who have joined this forum recently

Posted: Sat 27 Aug 2016 3:20 am
by Embowme
Anne Klepacz wrote:Welcome! I hope you'll all get lots of information and support here. We do also have a postal mailing list of UK members who can get our basic information booklet about KC, regular newsletters and other information (eg conference booklets and a DVD of the 2005 conference). So if you'd like to become a 'full' member of the group, do e-mail me with your postal address and I'll send you our introductory information
anne@keratoconus-group.org.uk


Hi,

I just joined recently, just want to say Hello to all.

Cheers,

Mark